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Summary – Refractory ??
Thanks to all who sent good wishes and kindly answered my questions about  
possible refractory etc.  Sorry, I had to cut some messages really short to fit.
#1 tests  a)  Multiple biopsies of SI, for signs of clonal lymphoma cells. Special 
stains of tissue may be necessary. (older males with late dx tend to have 
higher incidence of refractory CD and lymphoma) b) Gliadin antibody levels 
test, c)  A trial of pancreatic enzymes safe and reasonable.  Treatments.  a)
Steroids .b) Other medications in experimental trials -. Immune type 
therapies.   c) Pancreatic enzyme supplementation reported beneficial in  some 
celiac patients with refractory symptoms even if insufficiency is not proven. d) 
best probiotic is VSL#3. e) Probiotic yeast Saccharomyces boulardii is helpful 
for many gut problems. (For altered gut bacteria (dysbiosis) and yeast 
overgrowth  
#1 sent  following PDF files which I can forward if requested.
a) Article Etiology of Nonresponsive Celiac Disease ; Results of Systematic  
Approach  
b) blood publication dated 02/23/2007 highlighting complications of celiac 
disease.
c) article regarding VSL#3 probiotic preparation.
#2…..additional food allergies ( leaky gut.) Apparently 50% of celiacs 
allergic/reactive to milk proteins.   Food allergy blood testing might be worth a 
look.
#3 ….75yr old, not dx til age 69 found probiotics and/or enzymes an immense 
help.  iFlora probiotics from Sedona Labs & Jarrow Enzymes Plus. occasionly 
use Jarrow chocolate powdered whey protein for energy.
#4….refractory sprue, and has refused steroids and auto immune drugs,
#5 …. suggested that I  telephone her. 
# 6 ….apple cider vinegar and honey - If tolerated, no acid coming up, a little 
daily.  
# 7….probiotic called Culturelle, 
#8…..Check mercury poisoning 
#9….. if steroids don’t work Remicade infusions are a possibility.  
.#10….eliminate dairy products for a while, if working can tell within 2 weeks or 
so.
#11…go grain free (except for some rice) & Dairy free???  It helps a lot.
#12….Suggested there is no treatment for refractory celiac disease.  Diet 
won't help.
#13….doctor dx refractory celiac, prescribed steroids-no improvement, more 
tests  discovered pancreatic enzyme deficiency.  Now much better.
#14….Dr. Clark’s information.  www.drclark.com 
#15….Took over 5 years to recover.  detox protocol with supplements and 
germicidals for SIBO and candida, lymphatic overload due to a back-up 
of "bug" wastes, toxins.  Now total gf house; use only fresh organic, non-
processed foods (truly gf); toiletries & household items gf; avoid air-borne 
glutens (during harvests, in homes, grocers with bakeries attached, fish & pet 
food, etc.) Found alternative medicine docs to help.  My MDs disinterested in 
my health and in what I did to recover!   I had serotonin in my urine.  
hemotologist dxed it but didn't have a clue.  May have been caused by 
metabolic acidosis as a result of the bacterial and fungi overgrowth.  To 
improve it - alkalized (negative hydrogen ion) water for over a year. Look for 
gluten contamination.  Remember, gut bugs cause problems & must be fixed; 
killing them might not totally take care of the problem.  Even after correct 
protocol and treatments, took over 2 years. 
#16….Was on steroids which messed up potassium.  Been on TPN for 12.5 yrs. 
#17…Has refractory celiac, diagnosed in 2000 and didn't respond fully to a 
Gluten Free diet.  Doctor did all he could, incl steroids. sent me to Mayo Clinic 
in Rodchester, Minnesota to see Dr. Joseph Murray celiac specialist, tests then 
put on Endocort. so much better!  I continue to take small dose to keep my 
celiac in control.  Unlike other steroids, Endocort targets the gut, so fewer 
side affects.  
#18.. Immediately  start him on a probiotic..u will begin to see results in 2 
weeks...take him off milk and anything with sugar.  I would find a great 
integrative functional medical doctor...this person will have training in both 
medical knowledge and naturopathic medicine...  

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